Find your Family

Goddess here.  It is no secret that The Thinking Moms’ Revolution is working on a book right now…just keep reading the blog and we’ll keep the details on that up-to-the-minute as they come in.  In the meantime, I wanted to give you guys my version of how we came to be.

When Harry (my very cute little four-year-old) was diagnosed with autism one of the things the doctor I saw told me was to find a support group.  Um, yeah right.  Me?  I could not picture myself going into some room with a circle of chairs set up and crying over autism.  NOT.MY.STYLE.  Not even if it came with a gift bag full of goodies on the chair.  I jumped right into action instead.

I joined Yahoo boards to get information on autism, and on the autism doctor we were going to see (Dan Rossignol in Florida—LOVE him) but I had my family and IRL friends for support.  (And I have to say, my family and in-real-life friends are pretty awesome.  They have been there for me through all of this, have learned a lot whether they wanted to or not, and they have not judged.)  But they didn’t understand what I was talking about when I mentioned Harry’s head banging into his mattress, his swollen belly that was hard as a rock, his unending constipation…I needed to talk to people that had gone through this and could help short-cut me through the millions of pages of information Google presented me each night as I sat there researching.

Mama Mac was one of the first people to answer a question I posted in a yahoo group because she saw the same doctor we were prepping to see.  We exchanged a few back and forth emails and I told my husband “I think I just made my first Autism friend.”  I should say she actually had no idea that she was my friend yet…I don’t think she knew for another year and a half, but I read everything she posted on that group religiously.  (OMG, I am just realizing that I am a total autism mom stalker.  Um, oops.)

The day of Harry’s diagnosis, I typed the lone word ’Autism’ into my status.  A ton of my friends reached out, but Mama Bear, one of my college friends, gave me the quick and dirty because she was living it with her son…and made sure to stay in close contact.

My IRL friend’s college roommate had a son with Autism.  I talked to her next.  Sunshine.  We ended up following the same blog and we both started seeing a homeopath that was doing great work with many ASD kids.  We met others that were seeing him too and Princess formed a group, then a group of a group, then a group of a group of a group and well, here most of us are, nicknames and all.

The funny thing is that while I flat-out rejected the idea of some sappy support group scenario I made up in my head, I helped build a family, and a most amazingly-awesome one at that, that lends support whenever it is needed.  I know every TMR mama (and The Count, our awesome token dad) and their children.  I know how they are doing, what treatment they are doing, and what they are seeing on it.  We send birthday gifts.  Cards when sick.  Hand-me-downs.  Supplements.  Books.   We’ve got inside jokes about our inside jokes.  We roll together at Autism One— you will see us there this year, t-shirts on!!  And I can’t picture my life without these peeps in it.

I guess what I am hoping is that people who are reading this will realize just how important it is to have proper support on this journey.  Find your autism family.  Laugh with them.  Cry with them.  Build trust.  Share your research and experience with them.  Plan your long-distance doctor visits at the same time and meet up at hotels.  Stop and visit along the way.  Google chat while drinking late at night (um, what? we’ve never done that!)  Start a facebook group and make up silly nicknames.  Be there for each other.  It is critical to have positive people in your life who understand what you are going through.  Because it’s big.  It’s huge.  It’s difficult.  But it is not insurmountable, especially with a collective force behind you.



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5 Responses to Find your Family

  1. My Chicago crew is slowing building here. 🙂 See you at AOne.

  2. Sugah says:

    Right on, sista!!

  3. Lisa says:

    So Jealous!!! LOL. Everybody going through this needs a group like yours!

  4. I am autistic and bipolar, but I also have a brain that is much bigger than what fits in my head. That brain is my support group. Fortunately I have an amazing group of family and friends. The are brilliant, wise and compassionate. Many have advanced degrees in psychology or human services. I am only still alive and functional due to their continued support. I owe them everything!

  5. Maggie says:

    Right on, Goddess! Meet ya for a drink later…um, what? We don’t do that…,Maggie Mae =)

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